Showing posts with label brittle bones. Show all posts

When I was younger I didn't hear or know about the '-ed' at the end of your official description "bowed." Instead I thought that my bones were like bows for an embarrassing number of years. I thought they were powerful enough to launch arrows from like Robin Hood did. And I thought they were like accessories that my mom sometimes would put in my hair; I thought they were like those bows: girly, cute, an extra detail to add on to complete the look. But if I tried to pull you back taut for an arrow you would only break. And "cute" after about age 12 becomes "weird," "abnormal," and "deformed."

The first time I remember singing anything joyful about you was when we sang that "bones song" in the fourth or fifth grade.
"The knee bone connected to the thigh bone,
the thigh bone connected to the back bone.." 
And I remember thinking that this song was totally wrong because those parts of you are actually called patella, femur, vertebrae. I think I grew up a little bit that day. I felt special because I was in on some secret that those other kids in my class didn't know about yet. Like when I watched my younger brother play with Thomas the Tank Engine toys and he hadn't realized that real trains don't actually talk, real trains don't really have faces that are friendly and rosy cheeked. But I kept my mouth shut because he was having so much fun playing with his trains, I kept quiet about your actual terms because my classmates were having fun doing all the motions of the song.

I didn't really know you as "fragile, bowed, weak, brittle.." at first. At first I probably just knew you as something that hurt, and so I screamed and cried often as a baby. Then I got to know you as something that other people could make feel better. Not long after I figured out your soft spots, and weaknesses - I learned to make you feel better on my own. Then you became the thing that I had to keep in mind, or at least try to as I grew my mind and tried other things. Finally, today, you are often the thing that I know best about myself. Sometimes this last fact is the most frustrating part of my day, and other times it is the thing that saves the day. Because why should you be the best thing I know about me? Why can't the best thing I know about me be what I'm going to do when I grow-up? Or what my dream wedding will look like? Or exactly what kind of exfoliant and then moisturizer to use on my skin? Maybe I don't want to know you! Maybe I don't want to know about the crack I am ignoring, the bruise on you I could care less about, and the old break that still hasn't healed yet. Maybe I just want you to lay underneath the tapestry of veins, muscles, and skin as chipmunks lay beneath a winter's snow. Maybe I just want you to exist like that, and move about when the time is right as seasons turn from cold to warm. Those are all childish and maybe even useless thoughts to consider, but they remain notions I have thought at least a hundred times. And if you have broken - needlessly, randomly, inexplicably - a couple hundred times, I feel justified in telling you my equally random, and inexplicable thoughts too.

These will be added to our other secrets that we have shared. Remember the time when right after coming home from getting our orthotic KFO braces, we were excited to start walking again and somehow felt the sudden sharp nip of a small crack? It was against the outside of the tibia/fibula, and I knelt down - quiet and alone in the kitchen until the sensation faded. For about two months everyone was shocked I wore those braces without complaint, tightly strapping down the velcro against my shin. There is a grinding sensation that happens against shoulder blades when in a tense moment I shrug in silence. The left knee locks unexpectedly and I jerk in public at the shock, and I am bartering with you: okay if you just slip back in your socket I promise to not crack my knuckles so much today, whatever you want I'll do it. Just please don't break! There were other weird tiny incidents, moments when we both knew that rather than drag mom or dad to the hospital to spend hours on the orthopedic floor - we would just deal. You let me know what matters and what doesn't. What is urgent and what is not, though to be truthful my stubbornness sometimes pushes your buttons and you glare at me from beneath the x-ray's light table. We will have our disagreements and then tell our friends and family "we're just going through a rough patch."
Our secrets are things that no one will 'get' no matter how closely they study the genes, the sources, or trace the family hereditary footprints of your fragility. They are not things I will ever tell my orthopedic doctor about, even if he gave you a name and prognosis. And as much as I would rather not know about all of your strange quirks and abnormal deformities, would rather look away from the strange twisted spiral of ribs mashing into spine on the x-ray, our time together has forced me to become close with discomforts. The friction of that feeling isn't what makes you fragile, and it's not what makes me any stronger or capable of a person - I think it just serves as a reminder that trying to flee from ourselves is what induces the biggest fracture of them all.

Yours forever,
Sandy

There is lots of medical literature out there that talks about how there are types of O.I. that experience a decrease in fractures at different times. And then there is information about hearing-loss that becomes more evident for people with O.I. at different stages. There is, I'm sure, also stuff about what happens when people with O.I. get older... things that I have clearly not bothered my head with. Yet.

I have been living that difference for at least the past 7-8 years. I haven't had a major fracture in quite some time (something that meant being in a cast for more than a month), and every time I have an x-ray of my chest/spine things are always "stable."My pulmonary tests don't waver far from the year before. My audiology tests reveal the same array of X's and O's on the audiogram. I am at that point of my O.I. where things are stable, and thank goodness for that!

When my friends ask me about fractures it can be difficult to explain to them what it's like. Particularly friends I met post-high school... they did not grow-up along side me, during the years when every two or three months I was in a cast. It's almost, in a strange way, like my friends post-high school are getting to know a different Sandy! Someone who is more willing to take risks, to go out, to party, to climb stairs to apartments, to trek through a blizzard, to do everything they do... because I am "stable" now. It is almost like having a totally different condition in a shocking way! I have found that there are things I could not possibly have been able to do as a twelve year-old without breaking my femur, that as a mid-twenty something I no longer think twice about. My friends post-high school don't come to visit me on inpatient floors, we do not spend our times together playing with TheraPutty, or seeing how long the other can stay balanced on the exercise ball.

It is a bit out of my league to explain the science behind this but I can offer some other insights. First is the most obvious: I am older. The liability for me to fracture a bone might not have changed, and I might still be just as fragile... but I certainly know more about my world and my body! I no longer have the same curiosity as my toddler or middle school self about what I can and cannot do. The temptation to try jumping into the bouncy-castle isn't as appealing when I know what might result. Secondly is that I have a better sense of the limits of what my body can and cannot handle. Those hundreds of fractures weren't just for the sake of archiving myself in hospital records! But each one taught me something about how much is too much, what it feels like right before a bone is about to break. And when that moment so much as pokes a finger at me I am quick to drop everything, to cease and desist. Thirdly, I am able to plan. It doesn't matter how much a classroom teacher, aide, physical therapist, parents may think to plan in advance for an incident where I might get hurt. Their planning will always miss some detail that only I will see, simply because it's my body, and my perspective. Being able to tell my friends "fine I'll go to the party, but someone needs to remain sober to carry me back down the three flights of steep stairs.." Or "okay we can go to Hong Kong and Macau but let's avoid the cobble stone paths if possible."

Things are different now and this is one of those times when the difference has been awesome. It makes me want to do as much as possible, get as much done as I can, cross off as many 'bucket-list' things as I am able to.. because I don't know when the next time things will be different again.

Unintentionally I got into a conversation with a group of fellow OI'ers about when they were ready to 'deal with it.' That of course being O.I.
I find it almost unnerving that many of the adults I have spoken to have all said a similar thing: "it wasn't until I was 30" or "it wasn't until after I was done with college" that 'dealing with' being an individual with O.I. was something that needed self-action. That is, more action than the splints, casts, x-rays, surgeries, rods, physical therapy etc already required on our part. I have also heard many folks say: "when I was a kid I wanted nothing to do with anyone else with O.I. or even hear the words O.I." And when I was younger I was much the same way! Mom would try to nudge me to talk to the other O.I. in the waiting room and I just rolled my eyes.

There are no credentials in psychology or sociology after my name and nor will there ever be. So I don't feel like I can really comment on why this pattern occurs in any official way.

After a fracture happens and it has been set in a cast or a splint, my attitude is basically: just as hair grows after a bad hair cut bones will heal. As a child it was easy to see through this 'OI lens' because that was my only job - to interact with the world that was no more than three feet in front of me. Anything else farther than that, or required any more depth was the responsibility of the adults in my life. I didn't have to 'deal with it' then because I didn't see anything else that needed to be dealt with!

What was frustrating was when others around me, those who had 'come to grips with' my diagnosis for themselves, acted on the assumption I was at their level of acceptance. I know, it is probably weird right?
Obviously a child with fragile bones should know why her parents are concerned about the first time she is sleeping away. Obviously a child with brittle bones should know why her teachers won't let her whip water balloons with everyone else on field day. Obviously a child with O.I. should know why going to the gymnastics birthday party makes everyone walk on egg shells.

But that's the thing - it's not obvious to a young child with O.I. if she doesn't realize it. At least it wasn't obvious to me. Until something happened, until that fracture was burning through my skin it wasn't obvious to me anything bad could possibly occur! If it didn't exist in front of my face then it just didn't exist at all. This was especially true when what existed in front of my face were friends and classmates who launched themselves at each other.

And this is why I'm glad that I was able to come to terms with having O.I. on my own. Well, okay.. life events definitely nudged me along... but still: I am the one who decides when and how I want to 'deal with it' these days. Adolescence happened, and that meant I couldn't get into fights with my parents about borrowing the car like my older brother did. College happened and that meant I had more research to look into than just whether or not my major was offered. Employment happened and it meant I had to worry about more than just showing up on time for my interview. These are all markers and life events that let me grip onto another piece of O.I. each time. Eventually the depth and field of O.I. expanded and I came to understand how two letters fit into my life, and the community that I carry day-to-day activities in.

On some days this line of sight I've got is very clear and on other days it's not so clear. Some times my grip on O.I. is firm and I clutch it close to me. Other times I'd rather fling it off the highest mountain and not bother seeing where it lands. And still other times my grip slips and I lose sight of it completely. Whatever happens though I'm okay with this knowledge: it is always ready for me even if I'm not ready for it.

There is nothing like getting a cast taken off. In general this is a happy day, but I have had enough casts taken off that I would like to share some tips on how to experience the best cast-taking-off moment:

1. Get excited. Your arm, leg, toe, finger, shoulder etc. has been immobilized for however many weeks or months. Today is the day that it will taste freedom again! Its skin will be able to breathe through the cotton of your shirt, feel the warm air of spring, the cold tingle of snowflakes falling. In your head you are excited to be able to do all those regular things you normally do, but appreciate the small things too!

2. Bring something to wear. I don't mean your best party dress, or a freshly ironed shirt. I mean that once you have your cast off - you'll probably be able to wear that t-shirt you've been dying to fit your arm through. Or maybe you've been wanting to throw on that skirt without having an awkward boot sticking out from underneath. You're finally able to resume life as you've been meaning to, and now is the day to make the switch. Go ahead, jump into those squeaky new sneakers, put on that watch over that wrist!

3. Laugh at the buzzing. The cast technicians will probably use what looks like an electric pizza-cutter. Its blades will rotate to chew through the fiber glass, and there will be a weird vibrating sensation. Don't try to hold it in, it never works. Laugh because it's like being tickled by a giant limb-freeing monster. Or if you do hold it in, let me know what your secret is because I can never hold it in.

4. Wiggle. I know, I know, they will say "I haven't cut it off completely yet! Wait a sec.." But at the first breath of air that touches your skin, you will want to flex your long-unused limb. You will want to just rip off the flimsy and frumpy looking cast, its cotton foaming at the edges like a hungry rabid dog - and this time you know that you will win this fight. There is something about being able to make those minute flexes for the first time that says: wow, my bone is really totally and completely healed. And only I can feel that wholeness! They can have their x-rays, they can keep your old casts, but you? You get to have a whole free limb again!

5. Don't scratch. This is the toughest one. And I almost always fail this step 95% of the time. Once the cast is off it might take you a few seconds to reconnect with that alien looking limb again. It looks scrawny doesn't it? It might look weird because you had an operation. It might look hairier, maybe it's covered in tectonic plates of old flecks of skin itching to be scratched off. I have gone from outright and ruthless scratching, or to the point of sly and discreet rubbing my palms against the newly freed arm. Because before you know it they will come with a wet washcloth and you will ask "is this going to sting?" (for the hundredth time) and they will say "if you didn't scratch, this won't sting." And of course it stings...

6. Smile. ...But you don't care because it's a sting that is like a love-nibble in comparison to the fractured bone you experienced months earlier. You smile because it is a sting that is refreshing, and then it will tingle - dancing its little invisible feet all over the top of your skin, clapping its hands in joyous relief that you are finally free and healed.

I am falling. I don't know from where I am falling, or why I am falling - but my entire body has gone clammy and rigid with the knowledge that gravity is going to smack me awake, before I actually break a bone.
Though there are worse ways to be jolted from your sleep, that is one of my personal annoyances. Dreams where I am falling. I then spend the next two or three minutes furiously yelling at my subconscious: how could you forget that I have brittle bones? What kind of sick joke is this? Get a grip on yourself and don't you dare dream it again! 

My friends are all heading towards the staircase, I hang back a few feet waiting for them to notice - already a big smirk on my face. I can't wait to make them feel like jerks. 
"Oh wait, Sandy can't go this way! Sorry Sandy!" 
"Yeah whatever. Some friends you guys are, I'll just go the long way by myself." 
If I call you a friend, it means that we are comfortable enough with each other that you are allowed to make fun of me - and I am allowed to ruthlessly make fun of you. Among my friends, forgetting that I am in a wheelchair is a joke that gets as much play as those well-timed "that's what she said.." lines.

I have never been a person that dog-ears pages in books to remember where I have left off; I just remember the page number. In my family I'm the one who remembers all the errands that each person has to do. When I was younger my parents would stick me into the carseat and tell me "remind me to go get the milk on the way home" or "don't let me forget to go to the bank.." The weirdest thing my memory can do is recall the due date of each library book sitting on my shelf. (But this doesn't explain for why I always had so many overdue library books as a kid - remembering something doesn't necessarily correlate with action).
It was and is easy for me to remember these things because they have meaning for me. They are often the relationship between point A and point B, they are the reason for why C leads to D, or when E then F must follow. I am not able to recall facts on demand, but I am able to build bridges between two facts or concepts - it's in the process of understanding the relationship between two things that I am able to come up with the rest of the picture. In school I was never a flashcard kid. Flashcards were about as effective for me as repeatedly banging my head on a brick wall, trying to find the way out.

This also means that most basic information completely slips my mind. The log-in information to my work computer. The numbers needed to access my voicemail. The fact that when my shoelaces are untied, I need to tie them before they get tangled in my front wheels. The socks on my floor should be folded or put in the hamper, not left there for 2 weeks. The weather says that it's raining, this means I should bring an umbrella. These are some of the things that the hinges of my brain just never seem to be able to close on. Oh, and of course -- I have a brittle bones condition. These things slip my mind faster than raindrops through a child's fingers.

Yep you read correctly, sometimes I forget about the O.I.

I forget that sometimes expecting myself to make it through a day in my wheelchair that begins at 6:30AM, and lasts until 10PM is unrealistic. It slips my mind that as my friends are ordering another round of drinks, I should probably sit the next one out. I don't always realize that driving up the grassy hill to chase after my brother means I cannot safely get backdown. I forget that when I get angry, punching a wall is not the safest catharsis. I don't always remember that when my hearing-aids sound their alarm, it means I should have packed spare batteries in the case. It slips my mind to check to see if a place is accessible before going out on dates. I forget to check to make sure that all the elevators on my subway route are working before heading out in a blizzard. I often underestimate how rugged my wheelchair is by going out in a blizzard. I don't always remember to tell the bus driver that my wheelchair needs to be tied down during rush hour commute. It doesn't usually occur to me that a day of bone pain means that I should go easy on myself the following day.  

I forget about all of that because I'm too busy remembering to live. Sometimes it's just not worth the weight on my shoulders to remember to build the bridge between myself and the O.I. Sometimes it's just not worth my time to continually traverse that bridge over and over again, in hopes that I won't slip-up and end up hurting myself as a result of forgetting.

I forget not because I'm being irresponsible, or reckless. I forget because I'm being cautious in my choices. I am choosing to forge ahead and take risks instead of willingly holding myself back. The fact of the matter is that when I need to trek across the bridge between myself and the O.I., I know how to. It's a journey and path that is well worn and travelled, but the point is that I get to choose when I cross that bridge and when I don't. I am free to forget, and it is one of the most liberating things about my life that I am thankful to get to do.

In a couple of weeks I will be another year older. I will have gone around the sun once more, and I appreciate you all for joining me in this galactic adventure! But there are some things that come with age that I am not so thrilled about, some happenings that I am taking more note of and a little freaked out by. Today I will talk about one of those getting-old-er-things:

Bone pain.

Since O.I. has much to do with the skeletal structure and there are many types of 'bone pains' associated with having O.I. - let me attempt to describe the bone aches that I am talking about.

I imagine it as the start of a dull migraine, but inside a bone as opposed to your noggin. This is the kind of bone ache that is not associated with post-operation roddings, and it is not as urgent as the bone ache associated with a fracture. This is the kind of bone ache that is like a row of perfectly hung family photos, and then there is that one that seems a little tilted to one side or the other. It is annoying, because no matter which way I might shift or move myself - I am rarely able to right things again. It is that knot in your headphones that no one ever knows how it got there; this bone pain is when you finally untangle that knot and that part of the wires lay disgruntled from a rude awakening. Other times it is like an itch that can only be scratched when you crack your knuckles, or when you wiggle your knee in that weird way that feels like it's jumping in and out of the socket. It appears cold, or suddenly hot to the touch, it can pinch, or just hang around dragging its feet along the length of our femurs till it finally shuffles off somewhere in our hips.

These bone aches are usually not detectable by x-ray or MRI, but just because they can't see it doesn't mean we can't feel it - can't know its shape and size, and exactly how to get rid of it if only we could get our fingers *in* there!

The toughest part, for me, when I have bone aches is not letting it get to my mood. The last thing I would want is to be that 20-something who gripes about the ache in my joints, or how the "rains make my wrists hurt.." It is difficult to have the patience for others, or to carry myself in an upbeat manner when I would rather float on a waterbed towards my own private island. Still, in a weird way, learning to manage the bone pain by not letting it get to me is very much a part of how I manage the pain! Distracting myself with work, or forcing myself to be even more present in the moment, and reminding myself that even with the inexplicable aches - I must choose to participate and be engaged in the everyday, because otherwise I would be more annoyed with myself, even more grumpy.

It has yet to get to the point where I resort to popping an ibuprofen and going about my day. It might also be because I do not associate *these* kinds of bone aches with the need to take medication, (I associate pain medications with post-op pains)..the point being, these are all moments that will pass. But when it does pass, will I be able to say "I took part in its passing" or will I be able to say "I watched it pass me by"?
These are not easy decisions to make, despite how frequently it may look like we make these choices. I can only hope that as I get older, there will be more instances where I can make these choices because I am the first to say that I could really use more practice.

Sometimes the medical jargon and 'official' - sounding language can be boring and leave no sense of life & humanity in a person. It can be tough to wade through all of the facts and then figure out how those things are applicable to day-to-day living. So I decided I would try to translate:
*All facts from here are from www.oif.org*

1. Fact: Children with O.I. can have all types of fractures-- spiral, rib, skull, incomplete, displaced, etc.
Translation: Children with O.I. can have all types of life experiences and adventures. Fractures will happen irregardless of what is happening (or not happening); you can decide on your life experiences, we cannot decide on the fractures.

2. Fact: The appearance of people with O.I. varies. Though many are short-statured, people with milder forms may be of normal or near-normal height with no obvious symptoms.
Translation: The appearance of people with O.I. varies because we embody the diversity of humanity; and the only thing that is obvious is how comfortable we are with this diversity as reflected in our attitudes. Our attitudes is the most manageable symptom of O.I.

3. Fact: One common characteristic of those with O.I. includes loose joints and muscle weakness.
Translation: Characteristics are not laws or definitions set in stone, they are not the end-all and be-all of anyone. Characteristics can be changed over time, they are features or attributes that can be changed with work and effort.

4. Fact: Bones fracture easily, most before puberty.
Translation: Life and its fragility are usually things most learn after puberty, we learn it before things get awkward and angst-ridden. Why? Because we are not most.

5. Fact: For some types of O.I. the mode of inheritance is unknown. For others it results from a dominant mutation, and for still others it may be from a recessive inheritance.
Translation: We won't always know where 'it' comes from, but we know where we come from if we choose to surround ourselves with family & friends. 

1. Making sure a place is accessible. I have often wondered what it is like to just know that I will be able to access everywhere I want to go. These days we have online resources like 'Yelp' that will say whether or not a place is accessible but sometimes they are not always accurate and it's best to call ahead. A few times I haven't been sure if a potential place of employment is accessible; when this happens I have either gone to the place myself to 'scope it out' or simply asked AFTER I have gotten the date for an interview.

2. Reassure that I am 'old enough' over the phone. For the gazillionth time NO, I am not 7 years old and no my parents are not around to give permission for me to speak with you. Besides, what 7 year old do you know will ask for parental permission to call a bank in regards to her account statement?

3. Hold up the bus or train. It is usually a rush hour and there are about a thousand pair of eyes silently yelling at me to hurry up because I need to get to Point A 10 min ago. Meanwhile the driver of the bus or train is fumbling with the machine that lowers the ramp, or trying to strap my wheelchair in securely. Believe me, I love going fast as much as the next rush hour city dweller, so if I could bypass all of that logistical hassle I would!

4. Be nervous when I crack my joints. This seems ridiculous and silly but it is what it is. It wasn't until about 2 years ago when I discovered that I could crack my back without winding up in a body cast! In a weird way I was excited and probably acted like a baby just realizing how to hold their own head up. But in a broader and more general sense, I wish I didn't need to be nervous about potential injury whenever I do something as simple as cracking my knuckles or taking a clumsy fall. There is no such thing as 'clumsy' in my world, there's either "I fractured" or "I was lucky that time.."